I am thrilled to have the opportunity to join the Timmerman Traverse for Sickle Forward and climb Mt. Kilimanjaro in September as part of a fundraising effort to expand newborn screening and increase access to care for patients with sickle cell disease (SCD) in Africa.

I first climbed Kilimanjaro in 2005 and had always thought of it as a once-in-a-lifetime opportunity. But I jumped at the chance to go again, knowing this trip will be so much more poignant and motivating - and importantly, will serve a purpose much larger than any personal bucket list item or fitness goal.

I knew very little about SCD when I climbed in 2005. Fast forward to 2024, I have spent the past several years working at Agios as part of an amazing community of people committed to developing effective treatments – and even cures - for the six million people worldwide who suffer from this unbelievably cruel, inherited condition. Patients with SCD have a genetic mutation affecting hemoglobin, a protein in red blood cells that carries oxygen throughout the body. Whereas healthy red blood cells are smooth and round, and glide effortlessly throughout the body, the abnormal hemoglobin in patients with SCD causes their red blood cells to be sticky and crescent (or sickle) shaped. These compromised red blood cells die early, causing a constant shortage of red blood cells. Furthermore, their sticky, crescent shape causes them to get stuck in blood vessels and inhibit blood flow. Patients with SCD experience daily, unrelenting and debilitating fatigue, frequent excruciating pain episodes that often require hospitalization, and numerous serious, short- and long-term complications including cardiac events, stroke, kidney disease, and end organ damage that often lead to premature mortality.

While rare in the United States (approximately 100,000 patients), it is the most prevalent inherited condition in sub-Saharan Africa where it affects about five million people, and where sadly, most of those afflicted die before the age of five years, simply because they cannot get an early, accurate diagnosis or access to basic care. Sickle Forward’s mission is to change this.

I still have vivid memories from my first Kilimanjaro trip: the beauty and kindness of the people of Tanzania, the varied ecosystems we encountered during the climb, the camaraderie of our climbing group (most of whom I had just met), our amazing porters and guides who offered tips on foot and hand placement to get up the Barranco Wall, hiking through the night on the last stretch so we could reach the summit at sunrise. Of course, I also remember the lethargy, the heaviness of my limbs, the extra effort required for every single step as we got to higher altitude levels because of the reduced oxygen there. When I learned about the Sickle Forward Kilimanjaro climb, I was immediately struck by the brilliance and symbolism of it. Not just because it’s the highest peak in Africa, but also because I imagine that intense fatigue I had due to inadequate oxygen is similar and yet just a small fraction of the struggle and the fatigue these sickle cell warriors experience just about every single day.

I am hoping to raise as much as I can to meet the team's $1 million goal. Thank you for helping me support this campaign!